Posted: November 23, 2016 | Written winter of 2015-16 during Esther’s medical leave

I cannot quantify the number of excruciatingly insensitive things that people have said to me about concussion and Post-Concussion Syndrome (PCS). I am continuously disappointed with the lack of knowledge and education. Even close friends have said shocking things.

One good friend asked me why I was wearing a soccer jacket when I didn’t play soccer. I didn’t even know how to respond since I had spent so many hours working hard for that team and to be a better soccer player.

A medical professional at a school told me to go get tested for Lyme disease, anemia, and Mono because it seemed unlikely that I could have concussion symptoms for so long. My concussion doctor laughed, and then politely assured me that it was still post-concussion syndrome. Being told that you don’t have PCS and that you have Mono (basically that you’re lying) is offensive.

On a day when I left school early with a splitting headache and had to miss a class, I told a friend why I was leaving early: that I needed to go home and take a nap because of the headache. Her response wasn’t ‘I’m sorry your head is killing you. Feel better!’ but rather ‘oh my god you’re so lucky!’ because I got to leave school to take a nap.  This also miffed me—did she not hear the part about the splitting headache?

Unfortunately I hear that I’m ‘lucky’ very frequently. Using that word to describe my situation seems astonishing. I am told that I am lucky that I don’t have to play a sport at school, but people forget that I loved playing soccer and hockey and would do anything to play again. I am told that I am lucky to have “free time” in place of sports. All of that ‘free time’ is spent going to concussion appointments and taking naps since I can’t physically do homework immediately when I get home from school without a rest. I am told that I am lucky to have extended time for testing when I would give anything to complete assignments and tests in the allotted time. Luck is not a word that I would use to describe 1,305 days of headaches, nausea, fatigue, dizziness, vision and hearing issues, and sensitivity to light and noise, combined with the loss of sports. I’ve celebrated three birthdays and three Christmases with headaches. All of that adds up.

I rarely know how to respond to such ignorant and insensitive statements. They usually catch me by surprise. I think especially with friends, it is important to say something. They’re your friends, the people whom you trust with secrets and want to be with. You deserve better than to hear those things and they deserve to know the truth about what is going on with you.

There is a lot of misinterpretation of the word ‘concussion.’ People hear it and think of a short-term injury that isn’t very severe. In my case, concussion and PCS have invaded almost every aspect of my normal life.

There have been so many times where I wish I had said something when someone said something insensitive. I often find it hard to come up with something reasonable to say. Speak up because even if you have already been offended, you might educate that person and prevent them from saying something like that to the next person.

One of the nicest things that anyone has said to me during my struggles with post-concussion syndrome came from a boy in my grade, a friend of a friend. He asked me why I wasn’t playing soccer and I told him that I had had a serious concussion and couldn’t play contact sports anymore. He said, “Oh my God, I am so sorry. I can’t imagine what it would be like if something happened and I couldn’t play baseball anymore.” Baseball was his favorite sport and it meant so much to me for him to project what had happened to me into his own life and think about how much it would affect him. A moment of empathy goes a long way.

I’ve been surprised by how much a nice comment means. If people say nice things it’s usually adults that say I’m strong and that I have handled this gracefully.

It’s nice to hear that I’m coping with the situation, but it’s sometimes better to hear someone tell you that it sucks or for someone to be able to see how it would affect his or her life. I often don’t want to hear that I’m strong because I’m not always. I don’t want to hear that ‘it’s ok’ because it’s not. And please don’t tell me again what a great college essay I’ll have, because honestly I would like to write about something else!

Posted: July 7, 2016 | Written winter of 2015-16 during Esther’s medical leave

Below are things that you can do to help whether or not you have had experiences with concussion and/or Post-Concussion Syndrome (PCS). Unfortunately, concussion and PCS are not talked about enough—you can help to keep conversations going.

Educate yourself. There are tons of ways to do this.

• Check out the Concussion Legacy Foundation’s website which has great information as well as inspiring stories.
• Read.  Start with:
  • Head Games by Chris Nowinski.
  • League of Denial by Mark Fainaru-Wada and Steve Fainaru.
  • Concussions and Our Kids by Robert Cantu, M.D. and Mark Hyman.
  • Conquering Concussion by Mary Lee Esty and C.M. Shifflett.

Educate others.

• Share information with your friends and family—the more people who know, the closer we are to making this less of a problem.
• If you hear someone say something ignorant about concussions, correct them.  Educate them and let them know that their thinking is wrong and potentially very dangerous.

Don’t be a silent bystander.

• If you think that you or a teammate has a potential concussion, SPEAK UP. The person who says that they are worried that they or a teammate might have a concussion and should be checked out is far braver than the person who pushes through, putting him or herself or a teammate at immense risk.
• Remember, your teammate who just received a head injury is not the best person to make the logical decision.
• If you hear anyone with a concussion being accused of being a malingerer or faking his or her symptoms, step in. This should not happen, and the kid being accused likely feels very unsure, uncomfortable, or self-doubting and doesn’t know how to explain PCS or concussion to the accusers.

“Experts” aren’t always right.

• It’s been widely reported that some team doctors have provided misinformation.
• Coaches may put a concussed kid back in the game out of ignorance or desire to win.
• I have had an athletic trainer tell me in front of teammates that I did not have a concussion when I was suffering with PCS with which I was diagnosed by Boston Children’s Hospital.

Be sensitive and supportive.

• If you know anyone suffering with concussion symptoms, say something. This person likely feels isolated and alone and probably doesn’t get a lot of support from their peers. Just say that you know how difficult it must be, that they are doing so well coping/carrying on, or that if they need anything they can talk to you.
• Think about how it would affect you—what if you couldn’t play your favorite sport anymore? What if you suffered with chronic pain every day and were expected to perform in school as well as everyone else?

Ask. Reach out. You will be amazed at how meaningful a simple “how are you” text can be!

Posted: September, 2017

In March, I went on a two-week school service trip to Rwanda. I felt so much better symptom-wise, and I wanted to challenge myself. It was extremely hot, very sunny, and we had long days with intense physical service work. We spent a few days in Kigali before a daylong safari and ended with a long stay at Agahozo Shalom Youth Village, a boarding school for Rwanda’s most vulnerable youth. Two years ago, I don’t think I would have been able to go on such a strenuous trip.  This year I had an amazing time there and participated to the fullest. I took a 10 mile hike at midday where we were swarmed by kids from the local villages who walked with us and whom we taught the ABCs, I enjoyed long bus rides, and I formed amazing friendships with students I met in Rwanda and with my peers with whom I travelled. Taking that trip made me feel very confident that all the worst of my symptoms were gone and reassured me that my road to recovery was near complete — I want to tell you that yours is, or will be, too.

If you’ve read my previous blogs, and experienced them yourself, you know how rough concussion and PCS can be. I wanted to deliver you an update. I was out of school for the 2015-2016 academic year with some tough symptoms. Now, having had a great junior year, heading into my senior year, and looking forward to college, I can assure you that you can get so much better. It may not happen overnight, but looking back at my medical leave year and the blogs I wrote then, things have changed so much.

Through the Concussion Legacy Foundation and my website, Headstrong, I want to keep telling you my stories, the good and the bad. I think it’s important to keep in mind where you’ve been and how far you’ve come in your recovery, wherever you are, but I also don’t want you to feel that PCS is going to be forever.

It’s important to remember that thoughtful changes can make a world of difference: harnessing little memory tricks, opting for dinners with friends rather than parties with loud music, remembering your sunglasses. And having friends who understand makes a world of difference.

Now, I feel that the worst is far behind me, and that I am able to successfully manage a few residual symptoms. I am capable of anything academically and professionally; I’ve handled myself at a tough private school, and I undertook an intense internship this summer. At this point, other than contact sports, there isn’t really anything that I cannot do.

So if you feel that you’re in for the long haul, the load gets a little lighter each week, and at some point, you’ll barely notice the burden.

Posted: January 22, 2019

CLF Ambassador and former intern Esther Lovett is a normal college student who carries something unique in her wallet – a brain donor card. Esther’s struggles with Post-Concussion Syndrome (PCS) and the subsequent search for answers has led her to dedicate much of her time to raising awareness about concussions and sharing insights with other PCS survivors. She was invited to speak at a TEDx event where she discussed her personal journey with PCS, culminating in her pledge to donate her brain to the VA-BU-CLF Brain Bank in 2017. Watch the video below and help us continue to shine the light on PCS. 

Posted: November 15, 2017

Noah Bond from Hull, Georgia struggled through Post-Concussion Syndrome (PCS) symptoms that included daily headaches, severe memory loss and feelings of isolation. Esther Lovett from Cambridge, Massachusetts missed her entire junior year of high school because her symptoms were so bad. Both Noah and Esther fought through their symptoms courageously, and have made it their mission to help others with PCS. The Concussion Legacy Foundation honored both Noah and Esther with the Resilience Award at the 2017 Concussion Legacy Gala. Watch the heartfelt stories of the Lovett and Bond families.

Posted: May 31, 2016 | Written winter of 2015-16 during Esther’s medical leave

Post-Concussion Syndrome (PCS) presents a variety of symptoms which are invisible to others and often ignored or misunderstood. I have often felt that I’ve been lying to myself and to everyone for the past three years about my concussions. I have tried to conceal symptoms because I felt that an athlete is supposed to take hits and be fine—you are expected to push through injuries.

 

The truth is, I’m not fine. I have had daily chronic headaches, sometimes so severe I vomit; I feel dizzy when I stand up or turn around quickly; sometimes my vision blurs and I struggle to see the classrooms’ whiteboards; and despite my pre-concussion razor-sharp memory, I now sometimes struggle to remember the name of the main character in a book I just read. These things are not normal without a concussion, and it’s ok to acknowledge that.

There have been so many times that having PCS has embarrassed me. Over Christmas, I went to a party with family friends whom I had known since I was very young.  These were people who care about me, yet I was so anxious going in there because I didn’t want to tell them that I had to take a medical leave from school.  At the party, I avoided eye contact and talked to as few people as possible, which is very unlike me.  I was worried that even these friends wouldn’t understand and would think that I wasn’t strong or driven enough to continue.  I was even worried about telling some of my extended family.  Several of my cousins had graduated from the same high school and I felt awkward having to admit that I had to defer my junior year to recover, though it was certainly no fault of my own.

Nobody should be embarrassed about having PCS. You didn’t ask for this injury, and PCS is a very real condition that is difficult to deal with.  If you’re trying your best, that is all you can do and all anyone can ask of you. You should be able to talk about it.

I never liked to talk with most people about my lingering concussion symptoms. I didn’t want to look weak or feel like a victim. Even though I was coping pretty effectively with the injury, and still performing well in school, I feared that if I shared my symptoms, they would make me look subpar.

The main reason that I kept silent was that I worried that people wouldn’t understand. I definitely get weird looks, disbelief, and a lot of questions when I have to tell someone that I’m still suffering with concussion symptoms after three years. Even a sports trainer who should be informed about PCS said in front of teammates that I didn’t have a concussion when I had been suffering with PCS for two years. That is tough to deal with when you are already self-conscious about being concussed. All in all, I often felt it was better to not give anyone a chance to say something hurtful.

In retrospect, it is better to never stop talking about it. What you are dealing with is probably one of the hardest things you’ve gone through, more than most kids your age have had to endure, and you deserve to talk about it.

If someone doesn’t understand your suffering, don’t feel bad and get filled with self-doubt, but educate him or her. Tell them about PCS and your experiences and inform them about the medical evidence if they question. For every few people who roll their eyes or ask you if you’re “milking it,” there will be a true friend who cares and tells you that you’re strong and that you are doing a fantastic job coping. Those are the people you keep in your corner. I regret not standing up to more people when they questioned my injury.

There’s a balance between acknowledging that you have PCS and that it is hard, but not letting it consume you and your life.

I definitely had trouble with the acknowledging part. My mentality was to just keep on going, and not to dwell on what I had lost and how PCS was affecting me daily. After a while, the symptoms just become normal. When I eventually had to take a medical leave from school after my second concussion, and there was no more pretending that nothing was wrong, the years of symptoms and losses hit me so hard.  All of the emotions of having to leave my school community, my friends, my great teachers, my beloved extracurriculars plus two and a half years of pent up frustration and losses hit me all at once.

I encourage you to keep checking in with yourself. Ask yourself how you’re really doing and give yourself an honest answer—don’t push those questions away to save for later. Find those good, supportive friends or family members and keep talking to them.  Be honest with them as well.  I have found that talking about it with others is often the most therapeutic and you shouldn’t have to go through this alone.

It’s ok to not be ok. It’s ok to ask for help. Always keep fighting, but it’s about the big picture, not each little battle. If you can’t do a homework assignment, don’t stay up late with an excruciating headache to try and finish because you aren’t getting anything out of it and you’re hurting yourself. Give yourself a break and go to bed.  Your teacher will understand. Look at your recovery in its entirety and be happy with how far you’ve come and how much you’ve achieved.

Don’t get hung up on all of the losses, but allow yourself to acknowledge all that you have been through. Only then can you truly move on.

Posted: August 8, 2016 | Written winter of 2015-16 during Esther’s medical leave

I have found it hard to find support from my friends. Some of the lack of support results from my personality, as I am not a complainer and don’t like looking weak.

After my first serious concussion in eighth grade, there was an initial outreach of support. Once I was back in school, the support pretty much stopped, and that is when I needed it the most.

I was scared. It’s terrifying to be in situations in which you normally thrive, like giving a presentation or studying for a test, and feeling like something is very, very wrong.

Right after my injury, when I should have been home in a darkened room, I went to school to give a science presentation for which I was well prepared because but I didn’t want to let my partners down. That’s when I realized how symptomatic I was: I shook from head to toe, almost vomited, had a splitting headache and could barely stand the stimulation of the noisy environment.

Returning to school, I would try to study and I couldn’t remember most of what we had learned. Struggling through the adjustment to my symptoms was when I really needed support from friends.

I thought that this year I would be fine with my medical leave from 11th grade, but when I had to announce to all of my friends it became all too real. Having to say ‘I’m going on medical leave effective tomorrow’ hit me hard.

I had a little speech planned out: As you all know I got another really bad concussion and at this point I just cannot do what the school needs me to do to be a Junior. I’m going on medical leave, effective tomorrow. I have a spot here as a Junior next year and I’m also applying out to other schools to have options. I really hope to still be friends with all of you. I’ll still be in the neighborhood—I’ll be taking online classes and doing an internship. Expect invites to my house—Super Bowl party is on—and I hope that when you all do things together you’ll include me. I’m going to need friends more than ever over the next few months. Thank you guys for everything.

I only got to ‘I’m leaving school’ before I couldn’t keep it together. There was no denying it any longer, no pretending that it wasn’t happening—and it was awful.

I never cry, I dislike crying, and more than anything I hate crying in front of other people. I think it freaked my friends out since they had never seen me cry before. Right after that decision, I was numb. I had no idea what my year was going to be like and I already missed my friends and school.

You would think that the fact a friend who never cries and is always active had to leave the school she attended for twelve years and was clearly very upset about it would elicit sympathy and concern. It did with most of my friends, but some were surprisingly insensitive. Probably the worst thing a friend said to me that day was “we’ll all be living vicariously through you.” I spent most of my days alone at home taking online classes, trying to get exercise although there isn’t much that doesn’t hurt my head, and trying to do normal things like reading. Not how I wanted my junior year to go.

Only a few of my friends reached out. ‘Out of sight, out of mind,’ I guess.

There have been good things. My best friend, though she has little time with a busy Junior year, has been there during the times when I really needed someone. I have one friend who I wouldn’t have considered one of my best friends who texts me often with a simple ‘how is everything? How’s your head?’ and honestly that means the world. It’s that simple. And I will always remember his kindness. I have another friend who checks in, and it always means a lot to hear from her and be updated on what is happening at school. I am so grateful to the friends who have reached out.

It feels awful to be suffering through the worst thing that has happened in your life and have almost radio silence from many of your good friends. You place so much trust in friends and you expect them to be there in hard times. Someone I considered one of my closest friends didn’t respond to my upbeat texts suggesting we do something together.  I know she is busy but an “I’m so busy I can’t get together but thinking of you” text would have taken 15 seconds. She told a mutual friend to tell me that she was too busy to talk but would call soon—she never did.  I haven’t really talked with her in nine months. After reaching out several times, with no response, I just stopped trying—it got embarrassing for me. When she finally got in touch with me I agreed to get together, though I felt like our friendship was likely already over. When she told me during lunch that she totally understood what I had gone through because she had come back from a trip and had expected more friends to contact her to get together when she returned, I really knew that our friendship would never be the same. That comment was unjust—she has absolutely no idea what I had been through this year.  How could she if she didn’t speak to me at all? It was like she was a totally different person.

I learned an important lesson about friends through my experience as I truly saw who was there for me. It was hard to realize that a few people who I considered very good friends completely let me down; to not talk to a good friend for nine months is awful, especially when they are going through something difficult. I also realized that you are very lucky if you have a couple of really good friends and that at the end of the day, a lot of people won’t be there for you even if you would be for them. I’m extremely thankful for the friends who were there this year, and I will always remember those who were. I’ll still spend time with the friends who weren’t, I just understand that they aren’t my close friends.

I think to a lot of people, concussion doesn’t seem very serious. I don’t know if my friends realize that it’s been over three years of headaches every single day and how debilitating that is. I don’t know if they can empathize with how much losing soccer meant to me.

Soccer was a piece of my identity, an entire friend group, a coach who was a mentor, and simply something that I loved doing and had poured so much time and effort into. It was so hard to come to terms with that loss. I still have a huge drawer in my closet labeled ‘soccer stuff.’ It is filled with a bin with pairs of socks, a stack of old jerseys and shorts from different teams I played on, and all of my club soccer jerseys and warmups right on top, waiting for the next game. I waited a long time for that next game and it killed me to have to give that all up. I have tried so many times to open that drawer and clean it out and give the shirts to charity, to someone who could wear them, but I can’t seem to bring myself to do it. It’s not only a reminder of losing soccer but of all of the losses: hockey, tennis, 20/10 vision, pain-free days, ease in academics, running, watching action movies.

My friends don’t know that while I was in Florida for a week on holiday, my Snapchats made it look like I was having a great time but my experience was difficult. I got a terrible headache on New Year’s Eve (from a normal amount of sun and activity which was way too much for me), and spent the evening in my darkened room rather than at the party at the beach. At midnight I was doubled over the toilet vomiting because of the excruciating headache rather than listening to live music. I’m not always sure how to talk about these things with my friends since they rarely ask and I just don’t like to complain.

I encourage you, as I am encouraging myself, to say something, anything. These are your friends, the people who are supposed to have your back and be in your corner. Maybe they don’t know what to say. My experience isn’t a common high school experience and I think a lot of times people want to reach out, but they don’t know what to say because they cannot fathom this happening to them.

The kid out there silently suffering doesn’t need or expect hours of your time.  A quick ‘how are you?’ text, a Snapchat, anything. It only takes a moment to show you care.

Posted: February 26, 2018

I’ve been fortunate to meet a variety of Post-Concussion Syndrome (PCS) sufferers — from NFL players to other high schoolers — who have helped me realize that while PCS can prey upon anyone, we also can work to stop it. At the end of the day we want the same things: to protect others and to leave our sports—whatever sport, whatever level—better than we had found them. So, with camaraderie and in the hopes of providing the answers, that these athletes and I lacked, to protect future athletes, on my 18th birthday I pledged my brain to science, making me the youngest CLF brain pledge ever.

I suffered with PCS for over four years, enduring daily headaches, struggles with memory, having to defer my entire junior year, and ultimately giving up contact sports. Now significantly recovered, I remain committed to sharing my experiences in the hopes of helping others.

I’ve relentlessly sought answers to why some symptoms are so long-lasting, and what the most effective treatments are for them.  Unfortunately, there is a dearth of information when it comes to PCS, and what is available has been scattered.

I was extremely fortunate to connect with Chris Nowinski and the Concussion Legacy Foundation. Through CLF, I’ve reached other people struggling with PCS. By sharing my experiences and being an advocate via CLF and my website Headstrong, I hope to provide answers to others, even if the answer is that there aren’t many. I don’t want other people to feel helpless and out of control–I want them to have more information. I’ve decided to pledge my brain to research to the VA-BU-CLF Brain Bank.

I tell people to “get yourself back in the game, even if it’s a new game,” and that advice has two meanings. First, don’t be a victim of concussion and PCS and even if you have to totally redefine yourself, as I did, you can do it. Second, we have to put kids back into a new game of football or a new game of soccer that is safer without ruining the integrity of the game. Sports are invaluable. I do not regret playing sports, nor do I want contact sports to be ruined. But, I think everyone can agree that we don’t need kids to get hit in the head so much at a young age that they are forced to stop playing.

Most of the research done at the VA-BU-CLF Brain Bank is focused on Chronic Traumatic Encephalopathy (CTE), a neurodegenerative brain disease linked to repetitive head trauma. CTE recently made massive headlines when studies were published showing that 110 of 111 NFL players studied had CTE. Through CLF, I have met athletes and families for whom CTE is, or will be, a major concern. The effects of CTE, which can cause personalities and minds to deteriorate, are heartbreaking. I am not personally worried about CTE, but I’m still worried about the brains and the future of all young athletes. I want to donate my brain in camaraderie with those affected, and I also hope for answers about PCS.

We also need more answers about the female brain specifically. Females seem to be more susceptible to concussions, which has been largely attributed to less neck strength. I want to know if, as a girl soccer player, I was at significantly more risk for long-term issues than my male counterparts. If research proves that to be true, how can the games be different for girls and boys to reduce this risk? Also, why do girls tend to recover more slowly than boys from concussion?  I will leave my brain as part of my concussion legacy in the hopes that it can provide, especially to other girls, answers that future athletes deserve to keep them safe.

I’m incredibly grateful to the Concussion Legacy Foundation. I want to give a massive thank you to Chris and the entire CLF team for their tireless research, education, and devotion to this cause. I can’t think of any other person or organization which could have so perfectly changed my life at the perfect time. I thank them for all that they have done for me and for athletes everywhere.

I have pledged my time, passion, and brain to be a resource for concussion and PCS sufferers, advocates, families, and athletes of all ages in the hope of safer sports, swifter response after head injuries, and heightened awareness in the future. I ask you to help me shed a light on PCS to educate students, athletes, schools, coaches, and families. Let’s start honest conversations about PCS, and let’s get Headstrong.